What are the Research Priorities of Adult Patients with Chronic Kidney Disease not on Dialysis, their Care Providers, Clinicians & Decision makers?
Overview
We are excited to be asking people with kidney disease, their care providers and the clinicians who look after them, as well as decision makers, to share their ideas about the research that is required to meet their needs. This website provides access to the survey for those who wish to complete it, describes our research protocol (our plan) and the membership of the Steering Committee. We plan to post the results of the study (the final list) on this site as well, in the fall of 2015.
ABOUT
What’s the study about?
We are asking people with kidney disease, along with care providers, clinicians and decision makers to share their ideas about the research that they think is needed to help improve the treatment and quality of life of people with chronic kidney disease (estimated kidney function <45%), who are not receiving dialysis and have not received a kidney transplant.
Why is this study important?
People with chronic kidney disease and those who care for them “live the disease”, so they should have a say about what the most important research priorities are.
The objective of this project is to identify the most important unanswered questions about the management of patients with kidney disease not yet on dialysis from the perspective of patients, caregivers, clinicians and policy-makers.
How will the study be conducted?
We will follow an approach that has been used successfully by the James Lind Alliance in the United Kingdom (http://www.lindalliance.org). Research priorities will be collected using a survey that will be completed by patients, care providers, clinicians and decision makers. The full list of priorities that is identified will be narrowed down to a “top 10” list by a group of patients, care providers, clinicians and decision makers. All questions identified, and the final list, will be published on our website and presented to researchers and organizations that fund research.
HOW TO PARTICIPATE
We hope that you will share your ideas with us! If you would like more information about particpating in this survey, pleaseclick here, or if you have any questions, feel free to contact us.
SURVEY
Please Complete the Survey!
MORE INFORMATION
Our protocol, which provides details about the aims, objectives and methods of the project, can be found here.
The final list of the top 10 research priorities will be available here.
CONTACT US
If you have any questions about our study, please contact:
Results
Determining the research priorities for adult patients with chronic kidney disease not on dialysis
The importance of engaging key stakeholders, and patients in particular, in determining research priorities has been recognized.
From Dec 2014 to Feb 2015 a national survey of patients with non-dialysis CKD, caregivers, and the clinicians and policy-makers involved in their care, was conducted to determine the research priorities for adult patients with chronic kidney disease not on dialysis.
Overall, 439 individuals from across Canada responded to the survey and identified 1,811 uncertainties, from which the Steering Group determined the top 30 uncertainties to be considered further at a 1-day workshop in Toronto. At the workshop patients, caregivers, and health care providers from across Canada worked collaboratively to finalize the top 10 uncertainties of greatest importance to patients with CKD.
Below is the list of the top 10 research uncertainties prioritized at the workshop:
- What are the most effective new interventions and treatments to prevent the development and progression of kidney disease?
- What is the best diet to slow progression of kidney disease and what are the benefits and risks of specific diets (i.e. phosphate restriction, protein restriction, low salt etc.) in terms of kidney disease progression and quality of life?
- What are the causes of symptoms in patients with chronic kidney disease, including fatigue, low energy, sleeping problems, depression, anxiety and sexual dysfunction, and how can these best be treated to improve quality of life?
- What are the optimal strategies, such as having access to health information (e.g. lab test results), sharing of information, and/or improving communication, to help patients manage their health condition(s) themselves and to improve patient experience and outcomes.
- What is the impact of lifestyle factors (i.e. exercise, stress) on risk of developing kidney disease, kidney disease progression and quality of life?
- What are the optimal strategies for the management of CKD (i.e. those undertaken by the primary care physician, nephrologist, other health care professionals) to delay progression and improve outcomes?
- What are the harmful effects of medications used in patients with CKD, and in particular the combinations of medications used to treat other diseases (such as diabetes and high blood pressure)?
- What are the optimal approaches for the prevention and treatment of cardiovascular disease in patients with CKD?
- What is the best strategy (e.g. screening, programs targeting high risk groups, programs to increase public awareness) to identify kidney disease early?
- How do we ensure that patients with CKD have equitable access to care (e.g. nephrologists, allied health clinics) irrespective of location of residence or socio-economic status?
Download the summary report of the two different research priority setting exercises (in-person group and online Wiki group).
Download the 2014 CJKHD publication "Views of Canadian patients on or nearing dialysis and their caregivers:a thematic analysis"
About Us?
The study is funded by the Interdisciplinary Chronic Disease Collaboration (www.ICDC.ca) and supported by The Kidney Foundation of Canada. It is being led by a steering committee of 4 patients, 1 care provider, 3 nephrologists, and a decision-maker involved in providing care and resources for patients with kidney disease.
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Sofia Ahmed |
I am a nephrologist and researcher in Calgary, and I am very excited to be part of this initiative to determine the research questions that are important to people with kidney disease. I live with my family in Calgary.
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Meghan Elliott |
I am a recent graduate the nephrology training program at the University of Calgary and have since moved to Toronto, Ontario to undertake a Master's degree in Clinical Epidemiology. I am interested in patient engagement in kidney disease-related reserarch and am excited to be part of this exciting initiative. |
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George Chong |
President of Tarco Inc. in Calgary, with over 30 years of experience working in the Oil & Gas industries around the world (with specific focus on onshore/offshore facilities, rotating equipment and pipelines). I have been married to Anna for 26 years and together we have three lovely children. I have been diagnosed with IgA nephropathy for over 15 years and feel privileged to be invited to participate in this CKD Steering Group. |
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Brenda Hemmelgarn |
I am a nephrologist in Calgary, and actively involved in research as the Roy and Vi Baay Chair in Kidney Research. I have always wondered what patients and their caregivers felt were important research questions, and I am extremely excited to be a part of this project. My husband Tim and I have just built a house on an acreage outside of Calgary, so we are back in the country again. |
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David Hillier |
I am a retired executive from the financial services industry and have a wife, two daughters and one granddaughter. My experience with Chronic Kidney Disease includes being an advocate and a care giver for a family member who was on peritoneal dialysis, a sibling who has undergone a kidney transplant, as well as a family history of Polycystic Kidney Disease. I have seen firsthand the medical and hospital care provided for patients with Chronic Kidney Disease and believe that there can be better, more effective health care models based on patient-focused research. |
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Kate Huffman |
I have called Vancouver home for over 7 years and work for the Pacific National Exhibition (PNE) as the Manager of Community Relations. In 2011, I was diagnosed with Chronic Kidney Disease at the age of 25 and since then, I have been able to increase my kidney function from 13% to between 28-30%. After being diagnosed I wanted to bring awareness to kidney disease and promote organ donation. I have helped at community events with the Kidney Foundation of Canada, BC Transplant, as well as speaking engagements, participating in the Kidney March (walking 100 km over 3 days for the past 3 years) and now, being a patient participant in kidney research. I hope my involvement in research will assist future generations in avoiding chronic kidney disease, slowing its progression and improving one’s quality of life. |
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Andreas Laupacis |
I am a physician at St. Michael’s Hospital in Toronto, and currently practice palliative care. I am keen on patient involvement in research priority setting, and am very excited about this project. I have been married to Karen for 28 years, have two children at university, a dog at home, and try to spend as much time as possible on a small farm in the Ottawa valley. |
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Andrew Lei |
I was diagnosed with CKD in 2009. I am a patient under treatment at the Renal Management Clinic, Toronto General Hospital. I am a retired CPA/CA after 40 years of public practice. Currently, I serve on the Board of Directors of Advocacy Centre for the Elderly in Toronto. I have been married for 38 years with two children and two grandchildren. |
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Erin Lillie |
I am a research coordinator at St. Michael’s Hospital in Toronto with a background in epidemiology. I previously coordinated a dialysis priority-setting partnership and am excited to be on board to lend a hand with this kidney disease project. I speak French and in my spare time, enjoy snowboarding and doing yoga. |
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Neesh Pannu |
I am a nephrologist in Edmonton, Alberta. I am actively involved in both patient care and clinical research. As a spouse, a mother and a daughter I see the importance of the patient voice in how we spend our research dollars and how we deliver high quality care. I am excited to be part of this project. |
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Berlene Villanueva |
I am the nurse clinician for the Kidney Health Program at St. Boniface Hospital in Winnipeg, Manitoba. I have been active in the field of nephrology for over 15 years in both Canada and the United States. My interests include traveling, running and hiking.I am excited to be a part of a great project at hand! |
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Donna Young |
Born and raised on Cape Breton Island, I moved to Halifax in 1990 to attend university and have lived here ever since. My husband Jeff and I live 30 minutes outside of the city and have a German shepherd dog and a cat. I work as a medical laboratory technologist in the Blood Transfusion Lab at the QEII Health Sciences Centre, a job that excites and fulfills me. I enjoy a good book, a funny movie, and a great cup of tea. I am excited to have joined this committee to help provide representation as a care provider. |
